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CSRO
MAGAZINE BACK ISSUES
For the first time in Canada there is an informative resource publication
that empowers spinal cord injured consumers to take charge of their
lives. These are exciting and optimistic times.
The other day I met with a father of a young girl who had just recently
become a paraplegic after a motor vehicle crash. Naturally, he was
distraught.
He asked me "Will my daughter walk again?" Before I answered, I had
to think about the questions that I asked fifteen years ago when
I had my injury. In an instant I had to reflect on what has occurred
over the last fifteen years.
I compared the landscape of spinal cord research and the infancy
of the Canadian Spinal Research Organization of fifteen years ago
to where they both are today. As you may know, fifteen years ago
there was no discussion of a cure, in fact it was considered false
hope.
There were no written resources available for individuals to help
them cope and deal with the information. It was a very lonely place
for those committed to finding a cure for paralysis.
You will see as you read this magazine just how far we've come. The
Phase 3 clinical studies of Fampridine are well under way and will
lead to improving the quality of life for some spinal cord injured
people. We have also just completed publishing the After and Beyond® Spinal
Cord Injury Reference Manual, a tool useful to both those who have
suffered a spinal cord injury and their families. Our Shoot For A
Cure campaign is taking off, not only with corporate partners but
also involving the National Hockey League players and its community.
These are exciting and optimistic times, so when that father asked
me if his daughter would walk again, my answer was "Her chances are
far greater now then they were fifteen years ago, look how far we
have come."
Please help us find a cure for paralysis. Read on to learn about
our great achievements as well as the campaigns that are ongoing
in our quest to find a cure for paralysis.
Barry Munro, BA, LLB, President, The Canadian Spinal Research Organization
After
and Beyond Spinal Cord Injury Resource Manual
By SARAH HIGGINS
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Published by the CSRO, the After and Beyond® Spinal Cord Injury
Resource Manual is a comprehensive, in-depth source of information
covering issues and topics that someone with a spinal cord injury
might find useful.
The After and Beyond® Spinal Cord Injury Resource Manual is a
comprehensive, in-depth source of information on issues and topics
that someone with a spinal cord injury might find useful. The After
and Beyond® Spinal Cord Injury Resource Manual is the second
volume of the After and Beyond® Spinal Cord Injury Journal published
by the Canadian Spinal Research Organization earlier this year.
History In early 2002, the CSRO released the After and Beyond® Spinal
Cord Injury Journal for those with a newly acquired spinal cord injury,
their family and friends. The After and Beyond® Spinal Cord Injury
Journal was a huge success at rehabilitation hospitals throughout
the country.
Once the Journal was released, the CSRO started work on the second
volume of the Journal, the After and Beyond® Spinal Cord Injury
Resource Manual, meant to guide one from the rehabilitation hospital
back into the community. This transition can be overwhelming for
some and having the proper resources can help make it easier.
Building the Manual The After and Beyond® Spinal Cord Injury
Resource Manual started out as a fairly simple guide to help consumers
who were recently out of rehabilitation restart their lives in the
community. But as research began for the After and Beyond® Spinal
Cord Injury Resource Manual, the amount of information increased
to encompass much more than anticipated.
It also became apparent that there were more services available to
someone with a spinal cord injury than first imagined. This spurred
the creation of the Local Directory section, which contains contact
information on services and other resources in a specific area. The
Local Directory sections were carefully researched to contain information
on specific services in the area in which the Resource Manual was
distributed.
Contents of the Manual Before the writing began for the Resource
Manual, the topics that were of the most value to someone re-entering
the community had to be determined. Finally, 13 sections that would
cover what were deemed the most important aspects of re-entering
the community were included.
Among the topics included in the Resource Manual by the CSRO were
health-related items such as Bowel and Bladder Management, Skin Care
and Sexual Health, as well as topics that dealt more with independent
living, like Home Modifications, Financial Planning and Benefits,
and Attendant Management. The sidebar on this page offers a more
detailed description of the contents of the After and Beyond® Spinal
Cord Injury Resource Manual.
Refining the Manual The entire process of creating the After
and Beyond® Spinal Cord Injury Resource Manual was completely
consumer- driven, from the research to the writing, but most evidently
in the evaluation. It was important to the CSRO to determine whether
the information was actually useful to consumers, so the CSRO set
up focus groups of consumers to review the material, and sent out
material via e-mail to those who could not attend. Valuable life
experiences and consumer quotes were added to the sections.
The CSRO also made sure that representatives in the industry and
other organizations dedicated to helping those with spinal cord injuries
checked the accuracy of the content as well. In some cases, these
industry representatives wrote the sections entirely to ensure their
accuracy. Among those who contributed to the Resource Manual were
Tim Scott of Therapy Supplies and Rentals, Joe Allen and Terry O'Neill
of KINO Mobility and Dave Wallace of Adapt-Able Design Group.
As well, other organizations dedicated to helping those with spinal
cord injuries were consulted. The Canadian Paraplegic Association
(CPA), both National and Ontario, and the Ontario March of Dimes
were consulted on specific topics relating to their expertise and
services. As two of the largest not-for-profit service organizations
dedicated to those with spinal cord injuries, their input was invaluable.
Other organizations, such as the Centre for Independent Living in
Toronto (CILT) and Transportation Action Now (TAN) were also crucial
in creating the After and Beyond® Spinal Cord Injury Resource
Manual.
Without the help and support of the consumers and the dedicated industry
representatives, the After and Beyond® Spinal Cord Injury Resource
Manual would not be the enormously beneficial tool it is. The CSRO
is immensely thankful to all those who volunteered their time, resources
and personal experiences to help create the After and Beyond® Spinal
Cord Injury Resource Manual
The After and Beyond® Spinal Cord Injury Resource Manual is available
from the CSRO head office. For a copy of the Resource Manual, please
contact the CSRO at:
Canadian Spinal
Research Organization
120 Newkirk Rd. Unit 2
Richmond Hill, Ontario
L4C 9S7
1-800-361-4004
info@CSRO.com
www.csro.com
Resource Manual Contents
Your Injury
- Describes the nature of a spinal cord and the injury
- Information to help understand the injury
After and Beyond
- Biographies of eight consumers living with spinal cord injuries
Bladder Management
- Description of the bladder
- Descriptions of proper bladder management programs
Bowel Management
- Description of a proper bowel management program
- Descriptions of different bowel problems
Skin Care
- How to identify skin problems, especially pressure sores
- Description of the different stages of a pressure sore
Sexual Health
- Information on spinal cord injuries and sexual function
- Information on contraception and pregnancies
Health and Wellness
- Information on Autonomic Dysreflexia
- Respiratory and Circulatory system information
- How different diseases affect someone with a spinal cord
injury
Exercise and Recreation
- Ideas on how to find an activity and different places that
can help
- Description of the benefits of exercise
Financial Planning and Benefits
- Information on different benefits and how to apply for them
- Income tax planning and credits
Self Advocacy
- Personal rights for those with disabilities
- Legal assistance and how to obtain an attorney
- How to appeal different benefit decisions
Attendant Management
- General information on attendant services
- Information on how to interact with attendants
Home Modifications
- How to make changes in your home to make it accessible
- Accessibility options for your house, interior and exterior
- Workplace accommodations and tax incentives
Transportation
- Modification suggestions and where to get them done
- Driving assessment locations
- Information on funding agencies
Education and Employment
- Information on finding employment or becoming self-employed
- Information on education and how to obtain funding
Mobility Aids
- How to assess your needs
- Information on wheelchairs and mobility devices
Appreciation and Thanks to…
This Resource Manual was made possible through the financial support
of The Ontario Trillium Foundation.
The CSRO would also like to acknowledge all of the hard work and
dedication of the many individuals who gave of their own time to
help the CSRO create the After and Beyond® Spinal Cord Injury
Resource Manual. Thank you so much to all of those involved in this
incredibly important project.
| Iman Abokor |
Joanne Fisher |
Judith Radford |
| Joe Allen |
Carlos Gonsalves |
Nawid Razvi |
| Harry Beatty |
Anita Kaiser |
Kevin Rogers |
| Tony Belete |
Randy Kells |
Tim Scott |
| Meredith Burley |
Mark Ledo |
Bonnie Smith |
| Inka Dreger |
Dave Lostchuck |
Paul Sterling |
| Ryan Durham |
Brenlee Mogul-Rotman |
Ingrid Teunissen |
| Joseph Falconeri |
Claire Montgomery |
Keith Walker |
| Ingrid Fejer |
David Moore |
Dave Wallace |
| Carol Ferguson |
Bud Newton |
Charles Warriner |
| Andrew Fisher |
Terry O'Neill |
John Weir |
Fampridine-SR
Research Update
By SARAH HIGGINS
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This summer the CSRO was pleased to report on the opportunity to
participate in Phase 3 clinical trials of the investigational drug,
Fampridine-SR. These trials are now underway and are currently enrolling
patients in Canada and the U.S. Many of the leading SCI clinical
centres in Canada are participating in the studies and additional
Canadian sites are planning to join the study.
The studies are meant to evaluate the safety and effectiveness of
Fampridine-SR in the treatment of spasticity as it relates to spinal
cord injuries.
The studies are still looking to enrol consumers who:
- Are between 18 and 70 years of age
- Have a chronic, incomplete SCI (at least 18 months post
injury)
- Have moderate to severe spasticity
- Have no history of seizures
If you think you meet the criteria listed above and are interested
in being considered for participation in these studies, please call
the TOLL-FREE information line at 1-866-206-2322, weekdays from 9
am to 7 pm (EDT). Please note that calling the toll-free number does
not guarantee participation in the studies.
The CSRO continues to proceed with other research projects to cure
paralysis while these studies are taking place. You can see our progress
on the Web at www.csro.com. This important work is dependent on your
tax-deductible donations; each individual has a stake in this effort.
We thank you for your continued support.
Volunteer Recognition Awards This year's Volunteer
Recognition Awards Night was held at the CSRO's head office
in Richmond Hill, Ontario on Monday, November 25, 2002.
More than 40 people were present at the event to celebrate
the hard work and generosity of the CSRO's volunteers over
the past year.
Among the events celebrated that night was this year's presentation
of the Ralph Spadafore Memorial Volunteer Recognition Award. Established
in 2001, the Ralph Spadafore Memorial Volunteer Recognition Award
is presented to one or two of the CSRO's dedicated and hard working
volunteers. Doreen Spadafore was present at the event to honour this
year's recipients, Fern Fraser and Nancy Young. Fern and Nancy give
of their time every year to organize the Friends of Sandra Burton
Annual Golf Tournament, which keeps getting better and better. Without
their continual help, the tournament would not be the success it
is every year.
Also celebrated that night was the completion of the CSRO's After
and Beyond® Spinal Cord Injury Resource Manual. After months
of hard work, everyone involved in the creation of the After and
Beyond® Spinal Cord Injury Resource Manual was in definite need
of a celebration. The CSRO would like to thank all those involved
in researching, writing and evaluating the content for the After
and Beyond® Spinal Cord Injury Resource Manual. Without their
tremendous effort and time, the Resource Manual would not be the
incredible resource tool it is. For more information on the After
and Beyond® Spinal Cord Injury Resource Manual, please refer
to page 4.
Friends of Sandra Burton Golf Tournament For years, the Friends
of Sandra Burton Golf Tournament has been a great support for the
CSRO. Year after year, volunteers, who include Fern Fraser and Nancy
Young, this year's Ralph Spadafore Memorial Volunteer Recognition
Award recipients, plan the tournament and manage to bring in thousands
of dollars in support for the CSRO and spinal cord research.
This year marked the 11th Annual Friends of Sandra Burton Golf Tournament,
held at Cardinal Golf Club in Newmarket, Ontario on Friday, July
5, 2002. The tournament brought in 127 golfers for a great day on
a beautiful course. The total amount of funds raised this year was
over $20,000, one of the best years ever. Thanks to all the volunteers,
especially Fern and Nancy, and all of the golfers who continually
rally together to make this event such a success.
CSRO Golf Tournament The sun was shining and the weather
couldn't have been better for the 6th Annual CSRO Golf Tournament
at the Woodington Lake Golf Club in Tottenham, Ontario on Thursday,
July 18, 2002. As always, the sold-out event was a huge success treating
the 144 golfers to lunch and dinner, and a great day of golfing during
the gorgeous daylong event.
Between the tournament, silent auction, live auction and raffle,
the golfers and sponsors raised almost $30,000 for the CSRO and spinal
cord research. This tournament would not have been such a success
without the hard work and organization of Mike Dorman of Therapy
Supplies and Rentals and the generous support of all the participants,
who were primarily from the healthcare industry. Plans are already
in the works for next year's tournament. Make sure you're a part
of it to enjoy a spectacular day of golf at the stunning course and
support a worthy cause.
Chris Beehler Annual Golf Tournament Chris Beehler was a 27-year-old
father of two young boys in 1994 when he was injured after falling
asleep at the wheel of his truck. As a result of the crash, Beehler
was left a C4 quadriplegic. But he decided that there was no point
in grieving or becoming depressed about his injury; the only thing
to do was get on with his life.
"I have hopes that I'll walk again and it's not that I don't miss doing things,
but there's no sense in feeling sorry for yourself," said Beehler. "I decided
I can be bitter and miserable and no one will want to be around me, or I can
get on with it."
And that is exactly what he did, starting the Chris Beehler Annual
Open, which has once again raised an enormous amount of money for
the CSRO. The tournament, held on August 14 this year, raised $26,000
for spinal cord research and the CSRO. Over the past seven years,
the Chris Beehler Open has contributed over $81,000 to the CSRO.
This year, 92 golfers took to the tees at 7 a.m. at the Colonnade
Golf and Country Club in Joyceville, just outside Kingston, Ontario.
At noon, another 160 golfers started their rounds, making this one
of the largest golf tournaments the CSRO was part of this year.
"It always amazes me how generous Kingston is," Beehler commented. "Every year
it surprises me how many people come back."
The success of the 8th Annual Chris Beehler Open has once again spurred
plans for next year's tournament, which will be held on Wednesday,
August 13, 2003. Book your spot now to make sure you don't miss out
on this exciting event!
The D'Arcy Goodfellow Golf Tournament This summer, Papa G's
Sports Pub & Beer Cellar held the 1st Annual D'Arcy Goodfellow Golf
Tournament to help raise funds for the CSRO. Held at the Hydeaway
Golf Club in Emeryville, outside Windsor, Ontario on June 2, 2002,
the first year of this event raised over $2,800 for spinal cord research.
The golfers enjoyed a day on the exceptional course followed by dinner
at Papa G's Sports Pub. A great time was had by all, and left everyone
looking forward with great expectations to next year's event. Thanks
to everyone who helped out in the tournament, and all the golfers
who contributed to make the first year of this event a great one.
The Peterborough Chapter Over the past few months, one of
last year's Ralph Spadafore Memorial Volunteer Recognition Award
winners, Alda Webster, has been hosting events to raise money for
the CSRO and spinal cord research. This year Alda and her team of
volunteers at the Peterborough, Ontario chapter of the CSRO held
four wonderful events in the CSRO's name. These events included the
Second Annual Spring Jamboree; the Norland Dinner and Dance, with
music by Don Tandy's band Just Plain Country and catering by Phyllis
McHale and family; the Agony Dinner and School Show Band with great
help from Bill and Dan Ayotte; and the Lobster Fest. These events
together raised almost $15,000 for the CSRO.
Thanks so much to Alda and her team; we appreciate all their hard
work.
Richmond Hill Rotary Auction Once again, the CSRO is pleased
to announce it was a part of the Annual Richmond Hill Rotary Auction
on December 7 and 8, 2002. Part of the excitement for the past 6
years, the CSRO always contributes greatly to the auction. Last year,
the CSRO's enormous involvement with many rare and invaluable items
helped the auction reach over $100,000 for the third straight year.
This year, the CSRO was proud to announce it had almost 200 items
available for bidding in the auction. Among those items were some
fantastic hockey memorabilia, ranging from team signed Toronto Maple
Leaf jerseys and hockey tickets to a signed and framed Wayne Gretzky
jersey, along with numerous sticks and pucks signed by NHL players.
There were also other non-hockey-related items, such as clothing,
a jewelry box and even an electric toothbrush. Thanks to all those
who bid on the items and supported the CSRO and spinal cord research.
Shoot
For A Cure - News & Updates
By SARAH HIGGINS
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With over $300,000 raised to date, the Shoot For A Cure campaign
continues to succeed.
Over the past few months, there has been tremendous activity with
our Shoot For A Cure (SFAC) campaign. Shoot For A Cure, the hockey-focused
campaign directly aimed at and led by the hockey community, has raised
over $300,000 for spinal cord research since its inception. SFAC
seeks to raise awareness of spinal cord injuries in hockey and to
promote prevention of hockey-related spinal cord injuries through
the Play it Cool ™ prevention program. It is within the Play
it Cool program that the most progress has been made.
Play It Cool Play it Cool was created to generate awareness
and prevention of spinal cord injuries among children who play organized
or recreational hockey, as well as among the extended hockey community.
The vision of the CSRO is to equip minor hockey players with the
knowledge and skills that may prevent a hockey-related spinal cord
injury. The CSRO plans to work with the hockey community to instill
the belief in players, coaches, trainers, families and fans that
skill enhancement is the key to injury prevention.
The teaching format of Play it Cool is interactive, using direct
e-mail, Internet, video, and in-person interaction with minor hockey
coaches and NHL and AHL teams and players. Through partnerships with
minor hockey associations, and a partnership with Mitron Sports Enterprises
Inc., Atom/Squirt-level minor hockey coaches will receive and distribute
program materials to their teams and incorporate the Play it Cool
skills and accompanying drills into their practices.
The Play it Cool skills for the players and drills for the coaches
were developed in collaboration with Mitron Sports Enterprises Inc.
to ensure the accuracy and value of the content. Mitron is the founder
of the Mitron High Performance Hockey Development Program, which
has been on the market since 1995 and since then sold to 100,000
minor hockey coaches and 250,000 minor hockey associations around
the world. Through this program, the CSRO can reach tens of thousands
of minor hockey players and help prevent spinal cord injuries. With
their experience and knowledge of the subject matter, Mitron collaborated
with the CSRO to develop a curriculum that not only enhances the
skills of the players, but also helps prevent spinal cord injuries.
They also developed and co-ordinated the printing of the materials
that will be distributed to players and coaches. More information
on Mitron Sports Enterprise Inc. can be found at www.mitronhockey.com.
The filming for the direct e-mail campaign for minor hockey players
began this past summer with current NHLers like Phoenix Coyote forward
Brad May, chair of the SFAC campaign and Boston Bruin defenceman
Nick Boynton, and NHL alumni such as Kevin Maguire and Pat Flatley.
There are many more players lined up to make an appearance in the
Play it Cool videos.
The Mitron coaches were also busy this summer filming the drill portion
of the Play it Cool program for minor hockey coaches. The drills
consist of minor hockey players executing the skills with voiceover
by Joe Bowen, the "Voice of the Toronto Maple Leafs" explaining what
is taking place. The drills, available from the CSRO on CD-ROM, are
accompanied by a pocket-sized drill booklet, which explains the drills
and how to carry them out in a practice.
SFAC Public Service Announcements On top of the Play it Cool
program, there were other significant events taking place as part
of the Shoot For A Cure campaign over the past few months. One of
the biggest additions to the Shoot For A Cure campaign is the public
service announcements (PSA) currently running on both television
and radio. The television PSA stars Shoot For A Cure spokesman and
Calgary Flame forward Jarome Iginla and the radio PSA stars Joe Bowen.
The two PSAs will be running over the next few months, during the
hockey season.
Filming for the television PSA with Iginla took place in Edmonton,
Alberta during the summer. Always a great sport, and willing to support
the CSRO, Iginla gave up a full day of his time to film the PSA at
an arena in Edmonton. With him were Bill Zapf and Brett Pearce, who
both sustained their injuries at a young age while playing hockey.
The Summer's Fund Raising Events The CSRO was also proud
to be included in numerous different events across the country this
summer that benefited the SFAC campaign. The Calgary Flames held
their annual golf tournament this summer, for which SFAC was one
of the benefiting charities. The Flames donated $7,500 from the tournament
to the CSRO and spinal cord research, a great donation from a great
club. As well, the 2nd Annual Shorcan Golf Tournament was held this
August, which brought a donation of over $30,000 for the CSRO. For
more information on the tournament and Shorcan Brokers, please see
page 14.
Other events held during the summer, which helped fund spinal cord
research, were Brad May's Annual Charity Golf Tournament and the
Shayne Corson and Friends Celebrity Golf Classic. The AC Nielsen
employees' annual BBQ Fun Day event was also a great success with
NHL alumnus Syl Apps Jr., his daughter Gillian Apps, and Stephen
Weiss of the Florida Panthers making appearances to sign autographs.
The CSRO is thankful to all those who held events for the Shoot For
A Cure campaign this summer.
Premier
Partner
By CHRIS LOMON & SARAH HIGGINS
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The CSRO is pleased to announce that Shorcan Brokers Limited is our
most recent Premiere Partner. It's partnerships like this one that
allows the CSRO to fulfil its mandate.
Over the past two years, Shorcan Brokers Limited and its partners
have contributed over $45,000 to the CSRO and spinal cord research.
Shorcan, a 100% Canadian-owned firm, is one of the leading inter-dealer
brokerage firms in Toronto, Ontario. For more information on Shorcan,
please go to their Web site at www.shorcan.com.
Once again, the CSRO and spinal cord research were the big winners
at the Shorcan Golf Tournament, held at City Core Golf Course in
downtown Toronto. With an overwhelming donation of over $30,000 for
the CSRO and spinal cord research, Shorcan Brokers Limited managed
to more than double their already spectacular donation from last
year.
The Annual Shorcan Golf Tournament was held this year on August 7,
and attracted 16 celebrities from the hockey community. Included
in this number were 9 current players and seven alumni. Everyone
involved in this year's event was overwhelmed by the success of the
tournament.
"Last year, quite honestly, I was a little skeptical that this could be a success," said
John Gonsalves of Shorcan, one of the organizers of the event, and brother of
Carlos Gonsalves, a member of the CSRO and C4-5 quadriplegic. "But what was promised
was certainly delivered. The feeling we got from the players and everyone involved
was that it was absolutely perfect."
For a lot of NHLers, the commitment of a full day's tournament is
quite difficult with their busy schedules. That's one of the reasons
the Shorcan tournament is such a success; the evening event is just
the right length of time so more players can commit to it. And on
top of all that, they don't even have to do much to help the cause.
"This is a great charity event for the players," Gonsalves said, smiling. "The
players sit at a par-three hole and introduce themselves to people as they play
each one. They stand at the tee and hit the odd ball every now and again and
that's about it. It's a perfect way to do things."
Blown away by the success of this year's event, the organizers are
already in full swing to start preparations for next year's event.
Though it would seem they've already found the winning combination.
"I believe the Shorcan-Shoot For A Cure model is strong and will naturally grow
in future years," said Shorcan CEO, James Magee. "I don't think we'll change
much for this event."
With turnouts like this year's, they shouldn't have to.
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